Write Your Story

Please submit a short snapshot of what it is like to live with this disease.

A snapshot is a small insight into your life. It does not cover all that occurs in your life, but it imparts understanding for those who do not know what it is like to live a day in your shoes.

My CFS Journey

My youthful pockets were bursting with dreams! They still are, but the dreams have had to change.

Strange childhood symptoms increased in my late ‘teens; then a ‘flu vaccination while struggling with chronic infection and fatigue altered my life for ever. That was 50 years ago. I was 19. The gradual realisation that tertiary study could never be resumed shattered me. The extreme weakness and intense pain 24/7 wasn’t easy. I relied on the grace of God to give me the will to continue fighting. It must have been much more agonising for my courageous mother who was a war widow caring for her only child, and unwell herself.

For several years I was mostly bed-bound; and an incorrect verdict of Rheumatoid Arthritis and the consequent treatment proved nearly fatal. (CFS was not diagnosed until 1988.)

Miraculously, I was saved; and eventually well enough to work free-lance, part-time at home as an illustrator /designer for some years. I determined to acquire as much wisdom and knowledge by whatever means available.

My friends graduated, pursued fulfilling careers, married and reared children. I’m extremely blessed that a few have remained wonderfully faithful and supportive and included me in their families all these years.

Life hasn’t been what I hoped for or expected, yet there have been some amazing pleasant surprises! I have constantly been aware of God’s unfailing strength and guidance on a daily, hourly basis in my frustrating weakness. I believe that there is still a purpose for my life and am determined to fulfill it. Although CFS shackles my body, God liberates my spirit!

Hopefully, medical research will soon relegate CFS to dim history and stories like mine will be irrelevant.

Suzanne Pascoe February 2011

About MEI have had ME for 19 years. Formerly a very physically active and energetic person, a high school and university teacher and mother of three. My husband gave up and walked out after 29 years of marriage. It has cost me a lot.I have tried numerous regimes to varying degrees of success. At the worst, I am bedridden, cannot shower, barely speak or lift a fork to eat. It takes months to get to the level of doing just these basic activities. Then more months and years to shop, cook and just drive to the shops. I have had to employ a daily carer. I'm one of the fortunate ones.I want to work. I want to be well.Orthostatic intolerance (Ol-low blood pressure when upright) means I can only sit up for short periods and so I have to lie down much of the time. I know in time, snail time, I will gradually improve again but I just want to be well enough, just to be able to sit up long enough to go out and do something normal. Apart from the Ol, there is the fatigue, pain and a myriad of other symptoms to endure.After many years, I had recovered significantly, until June last year when I had a routine vaccination.It caused a major relapse and eight months on, I am still housebound again. The nature of this beast can be hard to bear.I search the internet and take to my doctor the latest information from world leaders in this field.The likes of Or Anthony Komaroff, Harvard, Or Peter Lowe, Johns Hopkins and Or Byron Hyde, Nightingale Research Foundation.We need mainstream medicos and medical schools to be informed of this condition.We need research money to encourage good research.We need tests available like those available in the US (VIP Dx , Reno) so that sufferers aren't diagnosed by exclusion and left to manage on their own, isolated in every way and so our blood banks remain uncontaminated.I have learnt to be productive within my limitations but one of the hardest things is being dismissed or misunderstood when this illness is just as disabling as MS or more than major heart disease.I am not just 'tired'. That is a pleasurable feeling in comparison.“ME is a complex, systemic disease that impacts both the nervous and immune system and believed now to be infectious “(XMRV). Dr Judy Mikovits.We wait ....

Mother of 4

I had my children after contracting a Virus that almost took my life at 19 years of age.

This virus has now limited the lives of my children.Opportunities to make wealth - personal growth and professional development have been replaced by Pacing - Loss of Education and a Very Different and Uncertain Future awaits them.We eke out our days on my Disability Pension and feel completely abandoned by our Countries Medical CommunityThe Forgotten Queensland Family

Living with ME/CFS/FM continues to be a Daily Challenge

For me, this is a devastatingly debilitating illness ~ racking my body and taxing my soul with never a day off for good behaviour. Being ill is one thing but the pain of not being believed is so dehumanising From a very active and busy life I became not only an invisible person but also a person with an invisible illness. Well-meaning people continue to ask me “Are you well YET?” And in the next breath tell me “You look so well!” This immediately minimises the severity of this illness. I am frustrated with the physical limitations and heartbroken by the insensitivity of others. The challenge is ~ how to break this impasse Education material, conversations and the physical experience ~ seem unable to help bring about the understanding, empathy, support, compassion, and validation that is needed. Today, as I face the daily challenges of living with this chronic illness, I am sustained by God's grace.My new normal life keeps me living simply, in the present moment, mindfully and gratefully. I keep myself a priority, listen to my body, and respond with care. Living generously and meaningfully, doing what I can when I can. I practice contentment and find joy in simple things ~ like drinking in, the beauty of the sunset.

Anon

I've Never had the Support I Needed

I've never had the support I needed.

I suffered alone even when I was vocal about my needs because my husband lost respect for me when I could not longer be his 'domestic' to the standards he required. I was riddled with guilt and even when I was misdiagnosed with Crohn's disease, I still was made to feel like it was somehow my fault. Consequently my own children, both boys, modelling their father, began to echo his disappointment with my efforts (or in their eyes a lack of effort). Unfortunately I no longer had the emotional strength to insist that I be treated with compassion and I tried so hard to be a good mother and wife at the expense of my own health.

Things have changed now. The husband left and I had a break from the children every second weekend for some years but mostly I have been a single parent trying to find a way to support my children beyond the sole parent pension. My health actually improved for a while after I mourned my losses (financial as well) and I am sure it was because I was free of the fear of being verbally abused if I neglected housework in order to preserve my energy.

My children have left home (mostly) and have a son each. Neither of them approve of my limited lifestyle and it is hard to get their help or understanding. I know it is a case of "out of sight, out of mind".

I live alone now and even though I wish I had home help to maintain my standards, I am happier to be able to do what I do without criticism (most of the time).Judy why

My Daughters Block

Please leave the loose threads. They represent all the many difficulties in life, the problems with the Medical Profession, the Research Paths – All seemingly going nowhere. From Justine’s Mother Eileen

Fibromyalgia

While coping with osteoarthritis and then Non-Hodgkins Lymphoma for several years and having lots of cancer treatment, I seemed to develop many more aches and pains. After having this checked out, I found I had fibromyalgia. This is a condition that triggers pain in muscles, joints and connective tissue without any obvious damage or apparent cause.This adds severe muscular pain, joint stiffness and fatigue. Insomnia is also a problem because you wake regularly with pain and headaches. My doctor prescribed tablets which help a bit, but I have learned to pace my body doing the things I love. These include Patchwork and Quilting. Golf, gardening and walking are limited. I find swimming helps a lot and try to swim each day. Cleone Escott - Queensland